Not sure what is wrong

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Not sure what is wrong

My son is 5 years old. He is a great kid and very smart, but we have some real issues with him. He still isn't completely potty trained. He says that he doesn't feel it. He has problems with both urinating and bowel movements. He also is very difficult to get to eat. He says that he isn't hungry. He doesn't feel when its hot or cold and we constantly need to tell him what to wear. He is up so late at night and doesn't ever seem tired until at last he is asleep instantly. He also is afraid of other children and of new situations. He also will be totally fine one moment and then burst into a screaming fit the next without any reason.

I don't know if he has SPD or not. I'm just trying to find answers and know how we can help him. Sometimes I wonder if it is just me because he seems so sweet and normal and fine and other times I'm about to go crazy. It's almost if he is two different people.

Looking for answers.

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Not sure what is wrong

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Oct 05, 2009
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be persistant and have hope
by: amy

My son showed symptoms from birth, he is now 11. Nothing satisfied him as an infant, always crying unless nursing, swinging on high, in the johnny jumper (I never took him out if he went to sleep, he would start to wake up a little and immediately had to start jumping again-4mo old), or being carried in the front pack carrier with the vacuum on (I cleaned the entire house with the vacuum and had to support his head up while he slept)

Life was horrid even though he was a very sweet kid. He couldn't tolerate most food textures, would not wear shoes/socks and refused to walk on grass or sand. This list goes on. The pediatrician just thought we were over anxious parents. With pressure from me he saw a pediatric psychiatrist around 20 months of age and we were told that's just how it is raising a smart child.

I knew this couldn't be right (though he already qualifies for MENSA) a smart kid can understand that the new sounds/smells are not a threat and don't have sudden breakdowns and inability to sleep. With continued inability to sleep and the development of night terrors, he saw a pediatric neurodevelopmentalist- still no diagnosis. Before he was 3 years old- with extensive research (I was in med school at the time) I discovered SPD- this was him, I had to do my own creative OT, carefully pushing his boundaries.

Even now, with generalized anxiety and ADHD, his current psychiatrist was surprised to hear SPD and only briefly remembered this existed but knows nothing about this and had to learn.

Don't just ask your doctor. Be persistent, even demanding, until you find the answer with the right doctor. Also, make sure his teachers read about SPD so they better know how to teach, guide and respond to him. A congratulatory hug when he reads his first word may paralyze him and drive him away from school. The teachers for my son did their research this year and have placed velcro under his desk to pick at when he needs different tactile stimulus so he does not pick sores on his face/head (sounds horrible, huh).

Hang in there, I recognize the desperation in your voice. Overall, Michael functions very normally and with established OT out there and better understanding of the disease now than when my son was little, your son may do even better.

Good luck. Pray hard and often.

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Oct 05, 2009
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Submitted by: amy

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My son showed symptoms from birth, he is now 11. Nothing satisfied him as an infant, always crying unless nursing, swinging on high, in the johnny jumper (I never took him out if he went to sleep, he would start to wake up a little and immediately had to start jumping again-4mo old), or being carried in the front pack carrier with the vacuum on (I cleaned the entire house with the vacuum and had to support his head up while he slept) Life was horrid even though he was a very sweet kid. He couldn't tolerate most food textures, would not wear shoes/socks and refused to walk on grass or sand. This list goes on. The pediatrician just thought we were over anxious parents. With pressure from me he saw a pediatric psychiatrist around 20 months of age and we were told that's just how it is raising a smart child. I knew this couldn't be right (though he already qualifies for MENSA) a smart kid can understand that the new sounds/smells are not a threat and don't have sudden breakdowns and inability to sleep. With continued inability to sleep and the development of night terrors, he saw a pediatric neurodevelopmentalist- still no diagnosis. Before he was 3 years old- with extensive research (I was in med school at the time) I discovered SPD- this was him, I had to do my own creative OT, carefully pushing his boundaries. Even now, with generalized anxiety and ADHD, his current psychiatrist was surprised to hear SPD and only briefly remembered this existed but knows nothing about this and had to learn. Don't just ask your doctor. Be persistent, even demanding, until you find the answer with the right doctor. Also, make sure his teachers read about SPD so they better know how to teach, guide and respond to him. A congratulatory hug when he reads his first word may paralyze him and drive him away from school. The teachers for my son did their research this year and have placed velcro under his desk to pick at when he needs different tactile stimulus so he does not pick sores on his face/head (sounds horrible, huh). Hang in there, I recognize the desperation in your voice. Overall, Michael functions very normally and with established OT out there and better understanding of the disease now than when my son was little, your son may do even better. Good luck. Pray hard and often.

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Sep 07, 2009
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my son is 5 years old
by: going crazy as well

My son just turned 5 years old and recently started kindergarten. I have been battling the same situations as you guys since he was 3. When he turned 3 it seems as though all hell broke loose. The fits, the hyperactivity, the behavior problems, the inability to control him, etc.

He has been to several doctors and now he is on his sixth medication. His teacher is very wonderful and helpful as well as the school. He is getting ready to start occupational and speech therapy as well as being evaluated for special education classes. He has been diagnosed with ADHD but I think it is something much more to it than that. I would like to tell you that it gets better when you start asking for medical advice but it doesn't. I do highly recommend you get help and a diagnosis of something before they start school so you can get the extra help they require. GOOD LUCK TO ALL!

Aug 26, 2009
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searching in the right place
by: Anonymous

Your son sounds just like my 3 yr old grandson,who is definitely SPD very smart sweet loving and then whoa he can go from zero to 60 in a second notice PLEASE seek help start with his Dr. and get him into O.T i promise it works tell your Dr what you are seeing and don't settle for simple solutions that he will out grow it or its just normal behavior . Your motherly instincts telling you something is wrong with your child and get him the help he deserves Good Luck

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